Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman

What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com

Thursday, June 24, 2010

I did it

Heard a lecture that I sort of understood on Derrida and his deconstruction of the binding of Isaac

That was more difficult than jumping off a mountain early in the day and soaring nearly 4000 feet in the air while I hung in a pose like superman, in my harness attached to the glider with just the air below and the fantastic kite above. WOW.

Leonardo would be so jealous.

Amazingly wonderful day.

More later with pictures and hopefully the amazing video of the flying Brian

Wednesday, June 23, 2010

New to CLL?

Here is a nice intro to CLL for newbies with a human interest angle from Curetoday.com. It is deeper than most introductions, but still accessible for those who are blessed to not need to be steeped in the nuance of the complex disease.

All of the doctors interviewed for the piece are tops and here's hoping that one of them leads the charge for a cure. Real soon!

Obviously based on my history, I am not in complete agreement on the last ditch role they see for transplant, though I am less sanguine about its place due to its evil dark side, graft versus host. I have seen too many good souls taken down that path without returning.

I am the 11q del that is mentioned for its propensity to have short remissions. No fun.

BTW, I am at the infusion center and I just received my CBC results. Platelets are a wonderful 274,000 today so it looks like the cyclosporin and rituximab is continuing to work its magic though not continuing to the lofty supernormal counts I had prior to my transplant. This hints at a weaker response than last time when the numbers were just up and up, but it way too soon to see a trend. It also suggests because of the 60,000 drop from last week that the IVIG I received two weeks ago may still be helping. If that is the case, I would expect a small jump when I check the count again next week before my next rituximab infusion.

If the numbers continues to fall, then I will need a Plan C and I will need it fast.

274,000 also means I can go hang gliding tomorrow. My only worries are the usual concerns whenever you jump off a mountain: not getting airborne with the resultant crash, midair collisions with other fliers, and hitting something you shouldn't when landing, but not the additional ones of bleeding and bruising from any minor jolt or twist that comes with low platelets. This is my chance.

Comments

This recently posted comment with its evocations and worried whispers deserved to be shared in a more accessible manner.

It leaves me wanting more - more contact, more information, and mostly more good news.

Please remember that unless include contact info or you email at bkoffmanmd@gmail.com I have no way to get back to you.

Brian,Feeling raw already and this article was just what I needed to be fully cooked. "Dad's numbers have gone down" this is what I hear from my Mom lips in slow motion the minute Dad walks out of the room. No more appetite for me, lump in throat, twisted gut..i am done, want to run from the sadness that has been hiding like a grim Lord or the Rings character.I have had a year off from the worry. He has been in remission for a year. I have been as creative as a 6 year old but with 40 years of know how.Numbers down is not awful news but it's the fear in her eyes that drowns me. I can handle my Fathers death, I can survive the misery of people bugging me, trying to ram rod me with Christian love.Can I remain a float in my always cheery Mom's tsunami?Today I think maybe, but it's going to take a huge pre-social purge on my part.A 46 year marriage , the only man she ever kissed. I am just not sure how she will survive more health drama...it's changing her.Tuesday it's marrow tapping time so I will have to wait, she will have to wait.I will have to go on like it's all OK until it's not... on the outside.good thing I have a puppy and a new bike.Love X1000

Wednesday, June 16, 2010

337,000

My platelet count has increased 11 fold since starting the rituxumab (R) and cyclosporin (CSP). I must saying it is working better than I or any of my doctors predicted for my unorthodox therapy. Now if only my pension plan would do the same.

337,000 is more than double what it was last week, and last week it was already normal. This is the highest level since they crashed when my ITP came back last July.

This unusual but not too toxic med mix is unknown territory, so the length of my first course of R or the dosing and timing of R maintenance is stuff that needs to made up as we move forward.

Moreover CSP has a mixed rap sheet. It helped my CLL and there are a few case reports of its anti-leukemic effects, but it is immune suppressive and could and has taken the brakes off cancer growth for others.

Maybe the true hero of my present story is the sesame oil one tablespoon twice a day that the herbalist recommended for low platelets even though the medical literature, while not silent on this, is also not screaming out the proof of its efficacy.

Maybe it's the Beatles watch that I have taken to wearing to bed with me. Everyone knows how good the Beatles are for platelets.

Yes, I am expecting a long and easy course, and a healthy happy pause before I must change course again.

If the family can work it out, maybe I will finally go hang gliding this weekend.

Tuesday, June 15, 2010

The profundity, shame, and denial of cancer and what Viktor Frankl might have to say

A friend recently posted this on her blog from an article in the New York Times and her mother sent it to me.

It is worth reading, and I hope you will find my short response that follows also of some help.

June 8, 2010, 2:00 pm Pushing Back at Cancer By DANA JENNINGS

Why does cancer seem so profound to us when compared to other diseases? And why do some patients clam up about their illness, while others are compelled to bear witness?

Dana Jennings

I’ve been asking myself these questions a lot lately. It will be two years next month since I had my prostate surgically removed, then learned that I unexpectedly had an aggressive Stage 3 cancer. In turn, that led to 33 radiation sessions and six months of hormone therapy.

I haven’t had any treatment in well over a year and my blood tests are right where I want them to be. Yet, I still feel haunted by cancer, can’t quite shake the depression and fatigue that arrived with the disease. They squat on my shoulders like two old crows.

Cancer does capture our imaginations. A quick check on Amazon.com shows about 44,000 books with the word “cancer” in the title (including a certain racy novel by Henry Miller), but only about 8,000 with “heart disease” on the cover, and a mere 311 holding forth on poison ivy.

One aspect of the bleak and profound chord that cancer strikes within us is the shame and silence that sometimes accompany the disease. My friend Gary, who was treated for prostate cancer last year, said that when he was a kid family members used to say that someone “went to Europe,” rather than admit that person had been killed by cancer.

My old and ornery New Hampshire relatives thought they could whup cancer through denial and sheer Yankee cussedness — no matter where they were bleeding from or how much. In the end, they died of their shame in raging silence.

I understand them, partly. A cancer diagnosis in their day was generally a death sentence — and people don’t want to talk about their executioners. Then there was the guilt, caused by thinking that maybe they were somehow at fault for being sick. And cancer’s earthiness, often striking at sexual organs and waste functions, also hushed them.

But in their fear, my relatives deified cancer, calling it “the Cancer,” the capital “C” understood. Sometimes, our entire culture deifies cancer. President Richard M. Nixon declared war on cancer in 1971, and John Wayne, in his best swaggering voice, once boasted that he had “licked the big “C.” (Mr. Wayne was wrong, however.)

For me, cancer’s profundity is about the biological betrayal at the cellular level, that somehow a killer has grown inside us. When I ponder cancer, I imagine darkness creeping into my body from some unknown abyss. And there’s that awful sense of being devoured, cell by cell.

We know that we’ve been damaged by our cancers and, too, by the treatment — by the radiation and the chemo and the scalpels. It reminds me of classic Orwellian double-speak from the Vietnam War: “We had to destroy the patient to save him, sir!”

And there’s always the nagging feeling that we could end up starring in an unwanted sequel to our cancer movie: The alien hordes from inner space have been vanquished, for now.

Ultimately, we’re offered a choice in the cultural exile cancer cultivates. We can just shrug and become one of the mute living dead, or we can try to become free-range sages, sharing our tales and trying to bring a little light into this world.

That’s why more than 400 people -– patients, caregivers and perhaps a few cancer-patient groupies -– gathered at a Relay for Life cancer fundraiser in Montclair, N.J., last Friday night. We were there to share tears and stories; there to hug each other and smile; there to remind ourselves that, damn it, we were not our cancers.

As we walked throughout the hot and muggy night till daybreak, our very movement defied the stillness that cancer tries to insist on.

Here is what I wrote back to her mother in response to sending me the link, with the personal references deleted.

Dear friend,

A bit dark for my liking. Certainly truthful, but only one perspective. He nails the Yankee fortitude, and I would add new age positivism ("The Secret" crap) and the power of faith and prayer to the list of the too often heart wrenching failures.

Also the self betrayal of your own body is so hard to shallow. He owns that one.

The dirty shame aspect seems historical, much less of a force these days. but replaced by those blathering well intentioned idiots who insist if you just had fewer negative thoughts or were thinner or just truly believed or (this one cuts close to my bones) ate less meat all this would never would have happened. That is one of the many unfairness of this disease: the necessity of listening to those as yet uninflicted preach their particular path as the one and only road to longevity. Give me a break. Mr. Jennings conjures the old shame demons but not the new ones.

My much bigger issue is what light is it that he want to share? That cancer is crappy? That the treatment sucks? OK. I can go for that, but I want more.

What is missing is the way out. A deeper understanding than just the words that we are more than our cancer. We are fully alive and with Viktor Frankl's conviction, we can still define ourselves in our struggles. Mr Jennings acknowledge we have a choice, but does he clearly see that act of choosing for the light saber it is?

We never ever lose that freedom to decide how we react, even when we have lost all hope. Does Mr. Jennings really know that ultimate strength he has? For his sake, I sure hope so.

Stay strong. Thanks for sharing this. I will likely use it in a post.

Me? I am still swinging for the fences, so that I won't ever need to worry about all this stuff.

Help NASCAR champion Jimmie Johnson and Be The Match FoundationSMtake the lead in a race for $100,000

Pepsi, Jimmie Johnson and Be The Match FoundationSM are teaming up in a race to win $100,000.

There’s never been an easier way to help children battling leukemia and lymphoma receive the marrow transplant they need.

Go toNASCAR.COM/PepsiRefreshand vote for NASCAR champion Jimmie Johnson and Be The Match Foundation’s Transplant Grants for Kids. Voting is open through June 23rd and you can vote as many times each day as you would like.

Pepsi has invited three NASCAR drivers to take part in this friendly competition. All are teammates on the Hendrick Motorsports team and each driver will promote a charity of his choice. The driver who collects the most online votes by June 23rd wins $100,000 for his charity.

Jimmie Johnson, the four time reigning NASCAR Sprint Cup champion, has selected Be The Match Foundation as his charity. The funds would help financially vulnerable families afford the uninsured and overwhelming recovery costs that come with a child’s marrow transplant.

“I can't imagine having to choose between being beside my child's hospital bed or being at work in order to keep our insurance active and a roof over our heads. It is a wonderful thing to know that Transplant Grants for Kids can help ease that tension,” Johnson said. “These grants give moms and dads a little less to worry about and give kids what they want most when they are sick - their parents by their bedside."

This $100,000 competition featuring NASCAR drivers is part of the Pepsi Refresh Project, a multi-million dollar national campaign that asks people to submit ideas to better their community and gives the public the chance to vote for their favorite.

Every year, 10,000 patients with leukemia, lymphoma, and 70 other life-threatening diseases discover they need a marrow transplant but have no donor match in their family. Many are children. They rely on Be The Match Foundation to help them find an unrelated marrow donor and receive the transplant they need.

While a marrow transplant can be a life-saving treatment, it takes a financial toll on a family. Often there is the temporary loss of at least one parent’s income to care for their child. And even with insurance, not all costs are covered. On average, child transplant recovery expenses exceed a family’s income by $1,200 per month.

Your support of Be The Match Foundation helps families pay for prescription co-pays, transportation to and from the transplant hospital (often in another state), temporary lodging, and other uninsured expenses for up to six months after transplant.

Sunday, June 13, 2010

Public Policy and Advocacy

Support National Blood Cancer Awareness Month Resolution

June 11, 2010

The Lymphoma Research Foundation is asking every advocate to write or call their U.S. Representative and urge them to co-sponsor a Congressional resolution designating September 2010 as Blood Cancer Awareness Month.

The resolution, which is being introduced in the U.S. House of Representatives this week by Representatives Walter Jones and Betsy Markey, highlights the impact that the blood cancers have in the United States each year, and encourages greater support for blood cancer research and education.

Let's be honest. There is way less political oomph and movie star glitz behind the fight against leukemia than those facing breast or prostrate or even colon cancer. but there no less pain and suffering with our less popular and less media savvy killer. I would argue there is more misery if you factor in the reach into childhood of many of the worst blood cancer.

Saturday, June 5, 2010

I was in the right place

My cyclosporin(Cs) level (the immuno-suppressive drug I restarted with rituximab for my low platelets) was 1011 two hours after my AM dose. Normally we want to see the level between 100-300.

This is a very toxic drug, but the rest of my lab, especially the sensitive renal function tests as Cs is a notorious kidney puncher, were all boringly within nomal limits. My blood pressure was up a bit which is another comment adverse event, but still quite safe.

What should I do? Hold a dose which I did while waiting for an answer, and restart at a much lower level? Dr Sharma was not sure. me either, so we turned to Dr Forman who uses this drug for protecting transplanted marrow.

And why no side effects? Not that I was complaining.

Turns out my peak level is meaningless. The trough levels are the whole story. measured at the end of the last dose, generally in the morning BEFORE the first dose that day. When taken by mouth, it is a twice daily med.

Cs with it's more measured modulation of immunity, is THE drug that opened the door to solid organ transplants. Before it burst on the scene, the only player in that arena was the infamous carpet bomber of the immune system, high dose steroids, and outcomes were not good.

The theory is that in order to prevent the beginning of the rejection of a transplanted organ (heart, kidney) it is critical to not let the Cs level dip below a certain safe threshold that is adequate to turn off the natural immune triggered rejection response.

I would guess the same principle applies to shutting down the immune modulated destruction of my platelets, but I don't know that for sure.

It is an off label, though not uncommon, use of this medication to treat ITP, so I bet pounds to peanuts that the guidelines are based on historical consensus and not on well designed studies.

So the peak levels meant nothing to anyone, and I am back on the same dose, waiting to get a trough level next week.

Tuesday, June 1, 2010

Forget the Good news

I misread the Flow report

I wondered how it could have said I was 11 q deleted without doing a FISH.

On careful rereading, it turns out they were referring to me as 11 q deleted based on my history, NOT their lab findings. While I don't anticipate any change in my chromosomes, that is yet to be confirmed.

Bad news

The bad news. There is CLL in the blood again It is not welcome back.

Worse news. It is aggressive, ZAp 70 +, CD 38 +, and 11 q del.

Worst news. Nodes have grown everywhere, the biggest being a conglomerate mass that is 6.4 x 3.4 cm in right mesentery. The word conglomerate is never used in a pleasant contest, is it? When you hear the word conglomerate, you best keep your head low.

Dr. Miklos was right. Nodes jump from 3 cm to 6 cm because they conglomerate. They skip.

The touch of good news. My CLL is still the same old bad boy, Zap 70 +, CD 38 +, and 11 q del. No clonal evolution.

Between Barium

The hospital has Internet connection, so between glugs of lovely barium, I can finally detail the story of my rash

I started my cyclosporin(e) last Friday night. Twice a day, a hefty dose.

Also started raw unrefined organic sesame oil to help the platelets Saturday night.

Sunday morning I took my morning meds, but because the cyclosporin was still in its bulky packaging (it takes a few minutes to open the annoying people proof single dose packaging six times) was downstair, it was not part of my usual AM ritual.

Good thing.

Ten minutes later after my usual meds, but with no morning dose of cyclosporin aboard, I felt a sudden flush, my face, neck, back of my hand, upper chest and upper back turned red with a measles like rash, slightly raised, but not itchy.

Very dramatic looking, but two hours later it was all gone. I looked good enough to visit a friend in hospital facing a transplant.

But first I needed to sort this out.

If this was a reaction to the cyclosporin the day before, then I was in trouble. Suddenly, my caution in setting up my plans a step ahead was playing catchup, and I needed to think fast.

I did not want to stop this new again magic bullet that saved me from a death spiral with platelets failing multiple interventions and in the process, offering the completely unexpected bonus of shrinking my nodes to where they couldn't be felt, normalizing my white count and reducing the CLL clone from 90% of my bone marrow to 3%.

The combination with rituximab was the platform on which my transplant was built. There are issues with that, but that is an old story that I have wailed about in past posts.

Taking cyclosporin off the table would be bad news. I needed it in my armamentarium.

So I took it. I took with it no antihistamine before so as not to suppress a reaction. I needed to know, and didn't want a Benadryl covering up a problem.

If it was an IgE mediated reaction, I could be looking at an anaphylactic reaction- shock and awe - with swelling in the throat, wheezing, and rapidly dropping blood pressure.

The only precaution I took was to instruct my wife in the signs of a serious immediate reaction. She knew which meds I should take, and whom to call- 911.

I took the leap, swallowed the 6 pills, and had my wife check on me every few minutes

Foolhardy? You decide.

Necessary. I sure think so.

As you know by now, I won my gamble. Nothing happened with my repeat challenge.

It was the right decision, but a scary one

Next I worried about taking my regular meds the next morning. Would the rash come back then? Again I got the answer I wanted. No problem.

Sesame is the only remaining untested challenge.

Only later did an allergist tell me that my reaction was probably not to the cyclosporin. The timing wasn't right which is what made me think the risk was probably safe in the first place. No itch was also unusual for a dangerous allergy.

She thought it was possibly a passive allergy from the IVig. Someone of the thousands that donated to make that pooled blood product, which after all is just antibodies, may have been allergic to one of my morning meds.

She also recommended, just to be safe was to get an Epi-Pen and dissolvable Benadryl. Shock therapy. Very dumb of me not to have put that in place myself.

Another later opinion from a dermatologist agreed that the IVig was the cause of my problem, but he thought the mechanism was different. It was an immune mediated idiosyncratic reaction, like the reaction to Amoxicillin in kids with mono. Not a true allergy. Not dangerous. The mono rash is insignificant, and is modulated by atypical T cells, not antibodies. Hey, I got atypical lymphocytes. This makes sense.

That is where I am putting my money. And my blood. I think that's the likely story.

So the plan is to try and get a different brand of IVig next time. And take an antihistamine the night before.

Not out of the woods yet, but all manageable.

Later today I will get my CT done and have the results, and pick up my flow cytometry report.

About Me

BkoffmanMD@gmail.com
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.